Do you have urinary incontinence after prostatectomy & radiation?

Posted by hmctgraybill51 @hmctgraybill51, Apr 16, 2022

Hello, I underwent a prostatectomy in Sep 2017. Gleason score of 9 with a positive margin. 8 months later began radiation tx with rising PSA. As of this date my PSA's have been undetectable however, I continue to have moderate to severe incontinence. I have seen two urologists with one suggestion the male sling and the other the artificial urinary sphincter for relief. I'm looking for any men with experience in either of these procedures and your comments. Thank You

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scullrower | @scullrower | Dec 4, 2022

I’ve had an artificial urinary sphincter for several years now. It has been very helpful although my urge incontinence can be so severe at times that urine pushes through the sphincter. If I urinate on a schedule those urges are fewer. Except for the discomfort for the few weeks after it’s insertion, I have experienced no pain and using the apparatus is second nature now. My only suggestion would be to check out Botox before going the sphincter route. Best wishes.

Jerry | @jerryegge | Dec 4, 2022

In reply to @vjlvpjalways "Are they using an ultra sensitive test if not this could equal negative" + (show)

No, they aren’t using an ultra sensitive test. I’ve read that ultra test results can vary from lab to lab and even the time of day. My personal opinion is that the ultra results add little value but can cause needless worry and concern. And, so far, my oncologist hasn’t requested the ultra tests.

davester | @davester | Dec 4, 2022

In reply to @narus "Below .1 is perfect. Mine was .01 and I felt fikr crap and started TRT." + (show)

How long did you wait after procedure to start back up on TRT?

narus | @narus | Dec 4, 2022

About a year. I had severe low energy and a great bit of difficulty walking I went thru physical therapy. had a brain scan and they all don.t have any ides.
after TRT I feel great.

Talk to your doc

narus | @narus | Dec 4, 2022

In reply to @davester "How long did you wait after procedure to start back up on TRT?" + (show)

I had my proton beam radiation in Dec 2020 and started therapy in September. Non of the doctors brought up the issue there only answer was physio therapy. I first sent a saliva sample to an online site and it then came back way low,

These are the tests I took
004598 Ferritin
CHM 004283 Luteinizing Hormone(LH)
998085 Venipuncture
CHM 004020 DHEA-Sulfate
CHM 010363 IGF-1
CHM 005009 CBC With Differential/Platelet
CHM 010322 Prostate-Specific Ag
CHM 140103 Testosterone,Free and Total
CHM 002188 Triiodothyronine (T3)
CHM 376137 TSH+T4F+T3Free
910385 Cardiovascular Report
CHM 082016 Sex Horm Binding Glob, Serum
CHM 001453 Hemoglobin A1c
CHM 322000 Comp. Metabolic Panel (14)
CHM 303756 Lipid Panel
CHM 081950 Vitamin D, 25-Hydroxy
CHM 004515 Estradiol

At first my PSA climbed a little over .1 but after 3 months it was back <.1.

Insure you talk to a doctor failure with field it may not be appropriate for you if your cancer was more advanced.

firespooks | @firespooks | Dec 5, 2022

I had my prostatectomy in 2006. Had to use 2 large pads for two years. Then had the sling device installed. Now I’m down to one medium pad per day.

spino | @spino | Mar 6, 2023

In reply to @rad62 "Hi Jerry, As you say you have 1 lymph node infected I am curious to know..." + (show)

Active surveillance does not mean you won't have the treatment. Instead, it means you've chosen to wait at least a little longer. So in a sense, we always start out with active surveillance, no matter what we choose. My urologist wants to start at around 0.10 (on the uPSA--tracking with ultrasensitive PSA. The long term consensus used to be starting at 0.20.
So the trend has been to start sooner for better results, not to wait any longer when the PSA is already past 0.2. UCLA, Johns Hopkins, and others have moved toward starting at 0.03 for better long term results and perhaps less total radiation also. If you're still in active surveillance, you might want to ask yourself how you will know that your surveillance has noted enough activity that you are ready to act.

budisnothome | @budisnothome | Jun 1, 2023

Unless you urinary tract is 100% in great shape don't do the aus800. I have lots of trouble. Won't get in to details but be very careful and find a great doctor. Many can install it but only a few can fix the problems created by the device

grandpun | @grandpun | Jul 24, 2023

In reply to @amandajro "Hello @hmctgraybill51. Members @seamayofan @jonbuuck @scullrower have shared their experience with an artificial urinary sphincter and..." + (show)

Short story: RARP 18 months ago, complete incontinence since despite Kegels and PT and only got worse after Cystostomy to clear scarred urethra tissue that had built up at the bladder neck.
Now with AMS 800 activated 10-days ago I went from 8-ish pads/day to one. But only if I quickly go to void at the first signal or preemptively every two hours.
This is great improvement but could it be that my bladder shrunk during the 1.5 years of incontinence? If so, is there a way to re-expand my bladder to at least avoid the rush to the bathroom?? I've tried delaying voiding only to gain a couple minutes and with significant leakage.
Thanks for all your previous posts that are most helpful and reassuring.

ken1946 | @ken1946 | Jul 25, 2023

I have leakage and ED. I had RP, 44 photon radiation treatments, and two years of hormone Lupron injections. My RP was in September of 2018. I am 77. My urologist tells me I should be thinking of other things than sex.